For Families of Autistic, the Fight for Ordinary

By JANE GROSS

Published: October 22, 2004

Lisa Krieger proved herself the equal of any presidential advance team in planning a first communion for her daughter, Gina, who is 8 years old and autistic.

Months in advance, Ms. Krieger recruited other children to rehearse walking down the church aisle with Gina, and videotaped the procession so she could practice at home. She begged the nuns not to change Gina's place in line, because she might scream or wander off if faced with the slightest deviation.

Ms. Krieger made sure Gina's communion dress was not itchy and let her try it on for a few minutes every day so she would not yank it off when the time came. She found a supplier of unconsecrated communion wafers so Gina would learn the taste and not spit the host back at the priest.

And, on the big day in May, she stationed people throughout the church in Washington Township, N.J., to whisper instructions if Gina got confused. ''The end result was she did beautifully,'' Ms. Krieger said. ''But you have to think about everything, know what you're walking into and what's going to happen. I can't prepare her for everything, but I try to eliminate as many variables as possible.''

Ms. Krieger's planning made possible what most parents take for granted: a child's participation in family activities and community events like a meal in a restaurant, a trip to Disney World or a movie. None of these come naturally to children with autism, a mysterious brain disorder that affects the ability to communicate, form relationships, tolerate change and otherwise respond appropriately to the outside world.

Exposing Gina to these experiences would have been unthinkable a decade ago, but more and more families with autistic children are finding that techniques that have proved successful in the classroom -- behavioral methods that evolved from the psychologist B.F. Skinner, visual instruction and adaptations of the environment -- can be tried at home not only to maximize learning for an autistic child but also to improve the quality of life for the rest of the family.

If the skills and behavior of the autistic child improve, experts say, parents and siblings have more choices of leisure and other activities, and less sense of stigma and isolation.

''It doesn't matter if a kid can read and write and do algebra if he can't go out to dinner with his family,'' said Bridget Taylor, co-founder of the Alpine Learning Group in Paramus, N.J., a school for autistic children that was the model for the neighboring EPIC school, which Gina attends. ''To me, half the battle of autism is getting these kids to be active, functional members of their families -- and getting the families themselves active and functional.''

It is a relentless, labor-intensive and harrowing task, overwhelmingly performed by mothers, that tests the strength of marriages, the resilience of siblings and the endurance of the women themselves, autism educators and medical professionals say. For Ms. Krieger it has meant accepting that her husband's patience with Gina is more limited than her own; being careful not to overburden or ignore her 6-year-old daughter, Nicole; and arranging occasional telecommuting so she can continue working as the director of corporate finance for the Greater New York Hospital Association.

Over the last decade, the number of autistic children receiving special education services nationwide has grown to 140,000 from 20,000, according to the federal Department of Education. While scientists debate what has caused the skyrocketing autism caseload -- a real increase in cases, better diagnoses, or the decision not to institutionalize autistic children -- there is no question that more and more families are living like the Kriegers, raising autistic children at home and trying to acclimate them to normal activities and routines.

Except for guidance from educators, organized resources for these families are scarce. In New York, there is a support group for siblings on the Upper West Side and religious instruction for autistic children at a few Westchester synagogues. There is also a new Web site from the Autism Society of America and home visits by therapists from special schools. But mostly there are mothers with file folders of information, passed from hand to hand. Fathers often take on extra responsibility for the other children.

Parents with fortitude, time and money have an edge. Ilene Lainer, for instance, had the luxury of leaving her job as a labor lawyer when autism was diagnosed in her second son, Ari, 8. Now she is a fulltime autism mom, prepared to spend as long as it takes to teach her son, who cannot speak, how to live in the world. Take haircuts. First Ms. Lainer took Ari to the barber, as she had her 10-year-old son, Max. The result was a ''hysterical, screaming child,'' she said, and rude comments -- ''Can't you control your kid?'' -- from other customers who could not see that the boy was disabled, as they would have if he had been in a wheelchair.

So, with guidance from Ari's teachers at EPIC, or Educational Partnership for Instructing Children, Ms. Lainer tried a step-by-step approach. She trimmed the boy's bangs, one snip at a time, until he could tolerate that sensation. Then she moved on to a daily spritz of water on Ari's face. Finally, she let small bits of hair land on his skin. Eventually, he was back in the barber's chair, even if sometimes in the lap of his mother or father, Steven Kantor.